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Jason Tougaw


The Stakes of Autistic Autobiography

What might police and educators learn from autistic autobiographers?

The family of an autistic boy is suing the state of Arizona after their son was assaulted by a police officer. According to the officer, he mistook the boy playing with string for doing drugs. In fact, the boy was "stimming" — a term used in the autism community to describe self-stimulation activities like rocking, spinning, or hand-flapping. In this case, the boy was playing with the string to regulate his anxiety about being alone in the park.

The officer in question had never heard of stimming. That's where autistic autobiographers come in--writers like Tito Rajarshi Mukhopadhyay , Temple Grandin , Naoki Higashida , John Elder Robison , Daniel Tammet , or Amethyst Schaber . In many ways, autistic autobiographers are ahead of science, education, and legal institutions. Nobody knows what causes autism. There's plenty of debate about how to define the condition. These writers offer first-person accounts of what autism feels like, translating traits described in tomes like the DSM into concrete experience, such as obsessive thoughts, repetitive behavior, difficulty moving or communicating.

Readers of autistic autobiography are a self-selected group of people who want to learn about autism, often because it affects their families. But there are good reasons for police officers, teachers, and lawmakers — or anybody interested in making a better world — to want to learn about autism. There are good reasons for any avid reader to dig in for the pleasures of the prose.

Video blogger Amethyst Schaber explains three common reasons an autistic person might stim: 1. Self-regulation , 2. Seeking sensory input , or 3. Expression . Stimming takes many forms. As the saying goes, If you've met one autistic person, you've met one autistic person . Autistic autobiographers make this diversity abundantly clear.

Schaber acknowledges that stimming can make so-called neurotypical people uncomfortable — as in the case of the Arizona police officer. She extends an invitation for her audience to consider varieties of stimming from her perspective. She may rock or fidget to replace the "bad sensory input" of a flickering light with a better feeling, or she might stim for play, spinning in a chair for fun. She may move or make sounds that stray from social norms, but she's not hurting anybody. "Looking normal," as she points out, "is exhausting." Norms evolve, and now is a good time to listen to autobiographers like her as we expand our norms to encompass the life experience of autistic people.

In The Reason I Jump , Naoki Higashida describes the cognitive and emotional processes he experiences when he knows he's straying from neurotypical norms: "I do some action or other that I’m not allowed to do; then I get told off for it; and last, my impulse to re-create this sequence trumps the knowledge that I’ve been told not to do it, and I end up doing it again. The next thing I know, I feel a sort of electrical buzz in my brain, which is very pleasant.”

That buzz in his brain trumps the authority of the person telling Higashida off. If that person happens to be a teacher or police officer, that could get him into a lot of trouble. The stakes are high. But what if the onus to change was transferred, in part, to that police officer or teacher? What if they learned to understand the value of that electrical buzz in Higashida's brain?

Tito Mukhopadhyay doesn't use the word "stimming" in his book How Can I Talk If My Lips Don't Move? But he describes "kinesthetic stimulus," especially flapping his hands, as a salve to anxiety. When feeling overwhelmed — by a power outage signaled by the slowing of a ceiling fan or by an unfinished puzzle — he would flap his hands in an attempt to calm himself. His mother Soma is well-known and controversial autism educator . She is also a canny observer of Tito's experience and devised methods that work almost like prostheses to her son's stimming. She used a pole to spin the fan's blades. She put the puzzle pieces in his hands, helped him complete it, then removed the offending pieces to help him see he could do it himself.

Soma Mukhopadhyay models a role many of us could emulate. She is a partner who offers both accommodation and encouragement for her son's self-advocacy. She's had a lifetime to relate to her son and learn the specificities of his experience and needs.

That level of intimacy may not be possible for every police officer or teacher. In fact, a representative of the Arizona police department in question made a statement that "it’s almost impossible to know and understand every single little piece of every single disorder." The statement is dismissive, but there is some truth to it. No teacher or police officer is going to be familiar with every trait associated with every form of neurological difference .

But it is possible for any of us to become familiar with neurodiversity a concept and a political movement based on the principle that we should value the variety of neurotypes built into the human species. Neurodiversity advocates emphasize the high stakes involved. A misunderstanding of another person's neurology might escalate to tackling a boy in a park. Such misunderstanding routinely leads to damaging educations or socially demeaning experiences. If we want to cultivate better understandings of neurological differences, autobiographies by autistic writers offer a very good place to start.


About the Author

Jason Tougaw is the author of The Elusive Brain: Literary Experiments in the Age of Neuroscience (Yale UP) and The One You Get: Portrait of a Family Organism (Dzanc Books).